I feel so ill and need help

[PIK]

I'm sorry for continuing to post on here, but I need help. Past problems with strep and OCD. Most recent ASO titers were 1560 about two weeks ago. Anti-dnase B was in the 600 range. I am feeling so ill. The rheumatologist gave me a 10 day course three times per day of penicillin 500 mg, now on a once daily dose of 500 mg. I called him about feeling ill and he told me to go to my primary care physician. I have an appointment with primary care doctor on Monday. I am going to ask him to run ASO titers again and test for lyme. I just feel achy, my ears hurt, I feel feverish though I have not had a fever, and just fatigue and illness. I went and got an HIV test, which was negative, because that's what scares me the most. Does anyone have any other thoughts about this? As suggested by others, I too believe I should be on higher doses of antibiotics for longer. The doctor doesn't seem to agree. I am planning on getting an appointment with Dr. B in CT soon. No psychiatric symptoms because I'm on Anafranil I guess. Just frustration with the doctors and some anxiety/fear. Please help. I feel like I'm having rheumatic fever again, which I think I had when I was 16 or 17. It almost feels like meningitis because the back of my neck hurts, but I'd be dead by now if it was. Aspirin or ibuprofen seem to quell the pain for a few hours.

[LNN]

It does sound like advocating for stronger abx and looking into lyme are both wise. Read the Pinned Threads for lyme at the top of the forum for some good background info. I don't recommend self-diagnosis or self-treatment (even doctors should never treat themselves). But...you also need to be able to function while you wait for an appt. with Dr B. If you're at a point where you just need to try something, you can check out Stephen Buhner's site for some ideas http://buhnerhealinglyme.com/ and while you're lying on the couch, read Pam Weintraub's Cure Unknown and watch the movie Under our Skin. For lyme support, lymenet.org has been somewhat helpful for me but I suspect there are better ones out there.

[SSS]

Well, I'm going to do my detox speech, because it sounds like you are hitting a big infection,

which releases toxins in the body- these things can help-

Good nutrition- eat 'right', eat good food often, no or very low sugar

A quality probiotic taken 2-3 hours from antibiotic

Epsom salt bath- 2-3 cups, very warm water, at least 20 minutes

Walking, circulation to light sweat

Glutathione - liposomal glutathione supplement

Make sure your bowels are moving regularly - magnesium citrate can help-Natural Calm drink

Lemon water-

drink 1/2 your body weight in ounces of water a day

Alka Seltzer Gold

Massage - gentle, if not used to getting them- foot massage

Sleep

Positive affirmations - I have some memorized, and take time to get quiet, sometimes facing the sun, and center myself.

* Edit to add:

Liver detox. Milk thistle supplement, ALA supplement, NAC or Curcumin supplement -

Castor oil packs (google - )

 

Hope you feel better-

Edited September 7, 2013 by S & S

[rowingmom]

I agree with LLM about the self diagnosis (I thought I was dealing with simple mid-life hormone swings for a long time), and self treatment. I do a lot of googling and come up with some different treatment ideas, but will always run them past our LLMD or naturopath first.

 

Your achy/flue-like (with no fever) symptoms could be a gram-negative bacterial die-off (herx) produced by the anti-biotics.

 

Lyme/co-infections often cause stiffness at the base of the skull and other meningitis-type symptoms (light/sound sensitivity, headache). These do not necessarily result in full blown meningitis, but my daughter had this symptom for months before her diagnosis. It cleared pretty much as soon as she started proper treatment. Penicillin for strep did nothing to alleviate her neck stiffness although the first round of penicillin did help her motor ticcing and ADHD/raging behaviours. During the second round all symptoms, including sore throat, came back while still dosing.

 

When our daughter started treatment the LLMD OKed our use of Japanese knotweed along with the abx protocols, and as Buhner says that using his herbs together with abx is not a problem, we have used knotweed since the get go. It is an excellent anti-inflammatory, but needs to be used in sufficient amounts. Buhner's associate says that the powdered herb is as effective as the tincture, although we use both. We get the organic powdered herb from 1st ChineseHerbs ($15/lb) and the tincture from WoodlandEssence $40/4oz. We use 1/4 tsp decocted powder and 1/4 tsp tincture 3x daily.

 

While we were ramping on the Buhner protocol DD did have some herxing, and in my bid to reduce the herx quickly I discontinued all the herbs (knotweed, sida actua, houttuynia, teasel). After about day 5 I started to see some atypical behaviour from DD. Hyperness, talking back, generally being nasty. I gave her 1/4 tsp knotweed and things eased a little, but still not the best. I then gave her 1/2 tsp knotweed tincture and my angel was back in 1/2 hour. It was amazing and made me a believer. The proper dosage does make a difference. I find that overdoing knotweed will produce low blood pressure though, so only use as much as you really need.

 

I feel that knotweed is the reason DD has done so well on abx. It helps reduce the cytokine-induced inflammation produced by the bacteria as well as the inflammation produced during bacterial die-off. It has just made everything go a little easier.

 

If you think you are dealing with lyme/co, go ahead and buy Buhner's books. I guarantee you will not be sorry. And even if you don't have lyme, according to Buhner, the bartonella and mycoplasma species are pretty much ubiquitous. Many, many people are asymptomatic carriers that will sooner or later have an event that supresses the immune system, allowing the infection to florish.

[Guest]

Not to be the downer here but antibiotics in and of themselves make people incredibly sick. I'm speaking from personal experience and what I've heard from healthy folks, especially these past 3 months. I feel better when I'm off of them and just have the major infections. I've heard from several healthy people who trialed them briefly (flagyl in particular) that it made them incredibly ill.

 

Flagyl - extreme lethargy, zombie like state, can't think, ill and must go to bed

 

Been on vanocmycin for 3 days now - extreme tiredness, complete loss of appetite, nausea, migraines, really messed up sleep

 

Of course you have to take them and I have to take them (when there are active infections), but they make my day to day a nightmare. So I guess for me, I always look forward to when the bottle runs out, counting down the days when I can get off of them helps, knowing things will get better with subsiding of infection and getting off of the abx.

 

I wish I could help more, but I am really sick too and have no idea what is at the root of this. In my experience, I've been ill for over 13 years, GP's don't know jack and don't ever think outside the box. If you can find a physician that looks at everything as a whole, studies all of your records, thinks outside of the medical school books, that is a good start. A really good start. I think seeing a good rheum. or neurologist is a good place to be, from what I've heard from others.

 

I really don't know much about lyme, I really don't understand it at all as the debate b/w what tests are accurate and which are inaccurate make my mind explode. But I can say I would not do long term abx treatment unless I knew for sure that I had lyme and or co-infections. Why? Because every time I am put on azith or omnicef , etc. etc. I get c-diff, and uti's and yeast infections and then I'm worse off than how I began - that's how I'm in the mess I am now (was put on diff. abx for tonsil and throat infection).

 

So sorry for your suffering. Wish I could be of more help.

 

I always wonder if people like us need a spinal tap, like maybe that will be way more telling. I've never had one personally.